Valuable Information

This is one of the best summaries of the dangers of toxic mold I have seen. It's less than 2 minutes long.

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We are moving today and Chris is joining us!

Musty smell and cross contamination

Two more stories have come my way this week. The first is a woman in Colorado who contacted me after seeing our story on the news. She left her rental home in the fall of 08. She began researching mold illness soon after she became sick and determined the consistent "musty" smell in the house must be mold. She knew to leave everything behind, moved to a townhome, and quickly began the quest for medical help. She has purchased her own air sampler from Environmental Monitoring Systems. She will now be able to monitor air quality in future home and work environments.
When I talked with her this week she emphasized the strong smell that was her first clue to the presence of toxic mold in the home.
The second story involves a woman who re-located to St. Thomas, Virgin Islands in 2006 for a 6 week work project. Within the first 3 weeks of arriving she found herself in the Emergency Room two times. When a co-worker came to see her in her residence he saw mold and told her to leave immediately. She packed up her belongings and moved to a different rental. Her husband and 6 year-old daughter soon joined her and within days her daughter became ill. The 3 of them went back to Alaska where the illnesses continued. Her clothing had cross-contaminated her home in Ketchikan Alaska. At this point she was unable to work, had 5 undiagnosed mini-strokes due to vascular inflammation, and both she and her daughter had MCS (multiple chemical sensitivity). They both became ill every time a cruise ship passed by. She sought medical help and within months had re-located to Benson Arizona. We talked this week and shared our stories. "Four months ago I could not have had this conversation with you", she said. "My brain wouldn't function this late in the day".
Both of these women are recovering. Not as quickly as either would like. But their determination has been an inspiration.

Short term memory loss

I have said little about the impact of the toxic mold exposure on my life. By necessity the focus of my life this last 19 months has been my children. I have been increasingly aware, however, that something is amiss with me. The pulmonary and neurological testing in December confirmed my suspicions. Further blood testing has also revealed abnormalities. By sharing a bit of my story I hope others will find help and hope.
These are the symptoms I have experienced: Chronic fatigue, ringing of the ears (tinnitus),disrupted sleep patterns, rashes, black tongue, emotional outbursts (to the point where my 10 year-old sobbed, "I want my old mommy back!"), joint pain, and general malaise.
I have read numerous times about something called brain fog. We have been on aggressive treatment for exactly a month and today I felt a level of clarity I have not felt for a very long time. Honestly, the inside of my head felt lighter. My pulmonary tests showed decreased lung capacity. I exercise so rarely I hadn't noticed the shortness of breath that comes with this. I did notice the decreased appetite that led to my weight loss in the last year. Mycotoxins play with leptin levels and several of us have high or low leptin levels.
By far my most debilitating symptom has been short-term memory loss and the resulting inability to multi-task. This is a very common symptom and easily dismissed as stress or age related. Let me immediately put the age issue to rest. My 19 year-old daughter has the same symptom and it showed up in her testing. I began to notice last year when I mixed up a number of appointments and missed some key events for my children. Uncharacteristic but understandable in light of the stress we were under. I could never find my cell phone or my glasses. I was having a much harder time in the kitchen. I would start something, leave it, and forget it. I had a hard time with my son's insulin doses. One time I gave him our dog's insulin by mistake. (It turned out fine. Just a humbling phone call to make to the doctor.) My kids couldn't depend on me to remember things they needed. I found myself saying, "Write it on the board or I won't remember." I started to forget where my car was parked. I couldn't find my keys. I couldn't remember what I needed at the store. This all was exacerbated when we re-located to Tucson. Parking lots are far more daunting without the familiar spots. Directions are very very difficult. I have to write them out in large print to read while I'm driving. I don't remember things I have told people. Numerous friends and family members have said to me, "You told me that already." It is indeed a disability and undoubtedly a result of mycotoxins at work in the brain. I have had two doctors assure me this is reversible and so I remain hopeful. Until then I am finding ways to adjust.
The other day my daughter gently "encouraged" me to buy a cell phone holster. I have thanked her numerous times because I haven't lost my phone one time. I keep a notebook with me and index cards nearby. I did miss an orthodonist appointment this morning for Colin. I wrote it down. I just couldn't find the paper.

Genetics

I wish I had paid more attention in High School. Biology has suddenly become so relevant. Here's a layperson's explanation of the genetics involved with mold exposure. A response to toxic mold has nothing to do with allergies. People aren't "allergic" to cyanide or yellow rain. All people will get sick when they are poisoned. Toxic mold is a poison. This is why a first step in dealing with toxic mold is leaving the environment followed by cleaning the environment. Aspergillus and penicillium can be cleaned. Stachybotrys is far more difficult to eradicate.
The question then becomes, "how well can my system clear itself of the poison"?
This is where genetics comes in. The person with the genetic pattern 4353 will have the most difficult time clearing the toxins. (There are other multisusceptible patterns as well). There are those with the 17252A pattern that will have a tough time clearing mold specifically. The good news is most people do not have these patterns. Upon removing themselves from a poisonous environment, they will improve. The bad news, for our family, is that we have the genetic make-up that will make this healing process very difficult. I have a double 4353. This means that each of my children received the 4353. Chris has at least one 17252A. Chris has not been tested. We know this because so many of the kids are showing up 4353 and 17252A. All of this answers the question that haunted me after we vacated our home in October. "Why aren't we getting better"?. There were some initial improvements but many symptoms remained 2 months later. At that point, I still had no doctor who knew and understood the connection between these symptoms and the mold exposure. It was difficult to maintain any semblance of sanity or hope. These test results help me look back with clarity and look ahead with hope.

And yet another

We took the boys to Great Clips today for buzz haircuts. If it's "boot camp" we're doing, why not include the haircuts? I watched as Colin talked to his stylist about his experience with mold. She had alot of questions for him. I was shocked at his vocabulary and extensive knowledge. "We have re-located to Arizona for de-toxing",he explained. "We had 300,000 spores of stachybotrys", he continued. "We take cholestyramine" "I got diabetes because of it". Pause. "Type 1"."Our builder stapled the shower pan liner instead of gluing it." He loved talking and she loved listening. Her interest stemmed from an experience she had in the early 90s. This I learned as we checked out. She lived in a University setting and a number of people were sick from the mold. She had a lengthy bout with pneumonia, developed candida, and suffered for many years after. The building was eventually demolished and a number of people sued and were awarded settlements. I stood there in amazement. And wondered. If there are this many stories in our small corner of the world, how does this remain such a hidden health hazard?

Stories

I remember in the weeks following Colin's diagnosis with type 1 diabetes I heard of numerous people with friends or relatives with the same disease. Suddenly,diabetes was everywhere I turned. It's the same thing with mold. In the weeks we've been in the Tucson area I have encountered numerous people with stories of their own. My daughter Megan needed dental work. She told the dentist her story of mold exposure. "Interesting", he said."We had mold remediation done several months ago and ever since my wife hasn't been the same." Mood changes and concentration issues have surfaced. He didn't know about the mold specialist in Benson. I talked with a woman whose daughter is in medical school in the Caribbean. We were considering this woman's rental home. I asked about water damage in the home and she seemed unusually interested and aware. She explained that her 24 year-old daughter lived in a brand new "super" dorm this last semester.
The daughter got quite sick and noticed mold under the cracks in her walls. Numerous students complained of illness as well. In this case, construction continued too soon after a heavy rain. I talked with a nurse in Dr. Gray's office who explained what happens to her when a mold patient comes in with contaminated clothing. She starts coughing immediately. She said she has to leave the room usually because she is so short of breath. One of the assistants in the office breaks out in rashes just from handling the paperwork. I talked with a property owner in Sierra Vista who had dozens of rentals remediated last year for toxic mold. It's quite sobering to realize the extent to which mold is an issue in our country. In large part because we have no mold standards. But that is worthy of a different discussion.

Aflatoxin Test Results

All 11 of us have now tested positive for aflatoxins. When you understand the nature of these mycotoxins and their capacity to do harm this could be alarming news. But, as one who has searched for answers for months on end, this news comes as a relief.
No more wondering which child to treat. No more wondering about Chris or myself. I recommend this test (which is a urine test) wholeheartedly to someone concerned about mold exposure and their family. Aflatoxin is the mycotoxin that comes from aspergillus. Ochratoxin comes from penicillium and tricothecene comes from stachybotrys. It's best to run the complete mycotoxin panel. The tests are available through Real Time Labs and require a doctor's order. They are costly but often reimbursed by insurance.
A couple of other notes about aflatoxins.The World Health Organization acknowledges these toxins to be carcinogenic. Aflatoxins can be found in peanuts and grains. To some degree we are all exposed on a daily basis. Our bodies generally will handle trace amounts. It's the high levels that occur in a water-damaged indoor environment and/or in foods that must be addressed.

Watching the parade in Benson

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Flip Flops in the Desert

We are learning the hard way just how seriously one must take the power of the cactus. The first day we went on a walk my daughter had to pull several "spines" out of my leg. I found this to be excruciating and an excellent lesson. Apparently I didn't get the word out in time because the next day Reagan pulled one out by himself. Today our 14 year-old was taking pictures in our front yard when she tripped into a small cactus plant. She was wearing her reliable flip flops. Quickly she came in to show me the "splinter" in her big toe. I tried all of my splinter tricks. Clay, duct tape, and needle scraping. By nightfall it was clear that whatever was in her toe was not coming out without some outside intervention. By 8:00pm we found ourselves at the Oro Valley Urgent Care Center. I felt sure they would not be surprised to see another Coloradan with a cactus spine in their toe. I was right. The doctor numbed her toe and began the removal process. When the initial tweezer extraction failed he asked for a small scalpal.He commented on Kristen's calm demeanor. Before long he pulled out a small but wide "pine needle"...at least that's how I can best describe it. He asked why we were in Arizona. Just the question I was anticipating. I told him. The nurse stayed to listen. They were stunned. The aflatoxin test results always draw a response along with the abandonment of our home. "Extreme Home Makeover is coming to Tucson next week", she said. "I'm hoping to volunteer. If I actually get to help I'll be sure to mention your name." Super Bowl, Exteme Home Makeover, Spine extractions. Lots happening in Arizona these days.

The only way through it

Like the fungal colonies embedded in our skin, there's a quote from Jackson Browne embedded in my mind. While the singer/songwriter is certainly no theologian, the simplicity of the thought has provoked a great deal of comfort this last week. Especially yesterday. I missed my son's talent show Friday night. He did a dramatic interpretation of a scene from Dark Knight. I ached to see him perform. He's a senior in High School and everything this year is "his last". Amidst the pain, I knew with even greater assurance that we are in the best place we can be. We had an appointment Friday with a doctor that confirmed our decision even more and I will write more about that later. Still, this phase of our journey, though filled with answers, is long and arduous. It's relentless and it's lonely. I'd like it to be over or at least find a different, shorter way to get through. That's why Jackson Browne continues to pop into my mind. "The only way through it", he says, "is through it." There's no way around it. There's no way over it. Today I woke up and felt a bit lighter. Less overwhelmed. It's one day at a time. And there's no special protocol for 'getting through'. It's just that. Getting through. I think I can do that.

We get to rent houses

I signed a lease yesterday. It's the second one I've signed since we left our home October 4th. We're in a vacation rental now so that makes 3 homes in all. Chris is in Colorado cheering me on so he hasn't seen this new home. I must pick up the story from where I left off on my initial blog. A church in Tucson graciously offered us a home to live in rent-free for 6 months. I saw the home on December 17th and found it to be ridden with mold. There was no doubt when I looked at the baseboards, shower area, and behind the toilets. It was the offer of the home that started us thinking about temporary re-location to Arizona in the first place so when it didn't work out I was determined to continue trying. We lived in a hotel for a few nights and a few days before Christmas came upon this vacation rental. It has been ideal. (In fact, it is 10 minutes from a radio studio willing to let us record our Building Relationships program.)Originally, the owner could only offer us a week. Ultimately he offered it until the end of January. The search for an equally good fit felt hopeless at times. That is until we met a family with a large home looking to rent to someone with alot of kids. They offered to leave furniture. There is a guest house where Chris can set up his studio.The mold testing turned out clear. And there are copies of the Left Behind books in the living room. We signed a 2 month lease which may grow into a couple more months depending on our progress. This brings me to the title of this blog. Yesterday I asked the kids to write a paper describing the change in their lives from last year to this year. I hope you smile like I did as you read this excerpt of Colin's.

" My life is different this year because we don't have to remeidiate and have to deal with mold. And last year we didn't have to go to Arizona. And this year we don't have to deal with icy roads and snow. This year I get to swim alot and I mean alot even in rain. What's different about this year is we get to rent houses not keep them."

Homeowner's Lament

I miss our brown couch. It's an interesting thing to miss in light of everything else we left behind. But it was a beautiful couch. Microfiber. Comfortable. It was a sectional and included a chaise that everyone fought over. We bought it just before our 11 year-old became very sick.A month after we pieced it together I watched this same son bang his head against it for 2 hours because he had lost his ability to walk. He had been up numerous nights with vomiting and vertigo. "I want to go run and play", he kept crying (and kept banging). Even with that vivid,horrifying memory I miss the brown couch. As I've sorted through my feelings, I realize it's not the couch I miss. It's the fact that our whole family gathered on that couch. Our older children stopped by and sat on it. We watched movies together on it. We argued on it. It's one of our dysfunctional patterns. You could set your watch to it. We would sit in the living room on a Sunday afternoon and spend 2 hours deciding what to do. It would be 4:00 before we reached a decision and then it was too late to do anything. There are other things I miss about the house. The walls leading to the game room. They're filled with the kids' school pictures. I miss the sight of Erin's 1st grade picture. And Shannon's senior picture. And Megan's 2nd grade picture with her hair pulled back.I miss seeing our little neighbor Brandi at our front door. I miss the sound of the dogs running to the back door. I miss seeing Chris come around the corner from his office to the kitchen. But, it's sure not the stuff I miss. Not at all. It's just like I've always heard and it's true. It's just stuff. And home has nothing to do with stuff.
Home is about the unseen. The intangible. The immeasurable. It's about love and warmth and relationships. Thankfully, mold has no power over these. In the end it won't matter what happens to our home with the brown couch and pictures on the walls. Because this is all leading to something much bigger. I take heart, more than ever, in the reality that "what is seen is temporary,but what is unseen is eternal."

A Picture in the Dark

I took a picture of Colin last night. It was midnight and he was sleeping. If you were me you would have taken a picture too. Especially if it was your son. Colin was 6 months old when we moved to Colorado. Within a year he started sleeping with his mouth open. During an annual check-up the pediatrician mentioned that his adenoids were swollen. "If they're still swollen when he's 8 we'll get them removed," she said. I thought nothing more about it. Sounded fine to me. I never thought to ask why they were swollen.  In the blink of an eye Colin turned 8. It was last December. His birthday was 6 months after he was diagnosed with Type 1 diabetes. This momentous occasion came right in the middle of our horror story. His brother was in the hospital learning to walk again. His sister was complaining of  headaches and dizziness. Our lives were beginning to crumble. It took a few months to schedule his surgery as it was clear his adenoids remained swollen and breathing at night was labored. The day before surgery I cancelled. He was sick with diarrhea. I was relieved. His blood sugars had been erratic. His head was constantly throbbing and he was often doubled over with abdominal pain. Fast forward to November.  I scheduled the surgery again. This time with a little more intent and knowledge. Adenoids swell in response to a virus, bacteria, or fungus. There was no doubt about Colin's. The ENT dismissed me when I suggested the mold as the source but I gave her our timeline anyway. We scheduled his surgery for December 15th. I was looking for any relief for him of any kind and even though he was still quite sick I imagined him breathing at night through his nose. That picture kept me going. Two weeks before surgery I took Colin and Reagan to see Dr. Gray in Arizona. It was my first question. "He's scheduled for adenoid surgery. What do you think?", I asked. He paused for a moment. He had been checking his left ear. "Let's wait", he said. "If we don't see improvement in a few months we'll re-consider." Good enough for me. I was relieved. We came back to Monument for only a week and here we are 5 weeks later. We've been on the full treatment for a week now. I say full treatment because I had missed something important until 7 days ago. Guaifenesin. It's an expectorant. Colin's nose has been running constantly since I added it. I bought him his own box of tissues. "Don't sniff it back up," I kept repeating. I learned from our chiropractor how important it is to release the mucus when your body is de-toxing. This is the background for the picture. It was 11:30 last night. (I keep Colin close by me since his blood sugars often drop in the middle of the night.) Something sounded different. It was his breathing. I turned on a light and there it was. His mouth was closed. Just as I had imagined.

Tears of gratitude

I can't imagine a harder week than this last week. I'm glad tommorrow is the start of a new one.
Because of the holidays we were unable to replenish our supply of prescriptions. Last Monday morning I spent 2 1/2 hours on the phone talking with the suppliers. Our treatment protocol involves 5 different sources. We have a temporary address so it's a bit more complicated. Mistakes were made, shipments were late, insurance didn't come through, and addresses were wrong. In addition, I lost the use of both of my credit cards. (long story). Colin's test strips for his blood sugar meter went from 20 dollars to 120 dollars for the second time in a year. More phone calls. More decisions. New samples have to be mailed to the lab in Texas when I thought they had archived the previous ones. I sent in tests for a home we're considering renting and heard on Friday that I made a crucial mistake. I followed the directions carefully. It said nothing about clear tape instead of masking tape. It had taken hours to do. Friday morning I opened our new nebulizer. It felt like Christmas. It wouldn't work. I called the pharmacy. The customer service representative told me what I already knew. No refunds. It's possible to get a replacement but it will take a month. I knew this because the first one I bought didn't work and we're still waiting on that one. She asked me what I needed it for. I told her. She took the time to listen and ask questions and then she let me cry. She told me about her experience the night before. She was driving to a new doctor for chronic pain. She got lost. She went 30 miles out of her way before turning around. She was charged 500 dollars for the visit when she thought it would be 200 dollars. She said she cried all of the way home. "And so," she said, "I understand how you feel." I cried again. This time out of gratitude. 






Dietary Changes

In my previous life (before mold) I had a tendency to do things  "over the top".  I started running in my early 20s. Within 2 years I ran a marathon. I had my first child when I was 27. Within 16 years I had 9. We moved to our mansion home and I learned to decorate. It wasn't long before the closets were decorated.  While this obsessive quality has some serious downfalls I'm hoping to use it for good now. If we're here in Arizona to get better, I have reasoned, why not help by altering the way we eat too. This has been spurred on by my daughter Megan (21) who joined me in December on this quest for health.  She has experienced some severe effects from the mold and has determined to follow the anti-fungal diet recommended by Doug Kaufman of www.knowthecause.com.  It has also been spurred on by ths thought I read by Hippocrates: "Food is your medicine. Your medicine is your food." In summary, we have eliminated processed sugars and yeast. Fungus feeds on carbs and sugars and often leads to yeast overgrowth even in an uncontaminated environment.I have steadily been making changes over the last six months so the kids were prepared. I am not a purist in this area by any means. Megan is the one following the anti-fungal diet. But a lot has changed and the kids seem to be benefitting already. We have scrambled eggs most mornings. Pamela's gluten and wheat free pancakes are a big hit. We use a little blue agave sweetener or butter and cinammon. I keep apples, oranges, grapefruit, and bananas out and that's all they have in between meals. Broccoli is one of the healthiest food you can eat because it survives fungus. I am surprised how much easier it is to shop (because there's less choice) and how much less conflict we have at mealtime (because there is less choice).  I do have to shop every other day at least in order to keep things fresh but since this is all I'm doing right now it works.After dinner the fruit is still up for grabs and I keep Luna bars, Odwalla bars, Lara bars, Bora Bora bars on hand and that is what they have before bed. We also make popcorn on the stove.I don't know how this will translate into the "real world" but for now the simplicity of meat, fruit, and vegetables with minimal snacking has helped a great deal.

Treatment for biotoxin exposure

This is a general overview of the treatment protocol we are following. I will track it from morning to night. Breakfast:  we take Neural Sensitization Capsules which are formulated at Key Pharmacy in Kent Washington. There are 26 ingredients in each capsule ranging from selenium to zinc to grapeseed extract. We take 3 capsules with each meal. In addition, we take Vitamin E, Carlson's Fish oil (fish oil from the North Sea where fish are mercury free), thiocid, ToCoQ10,expectorant to keep the mucus "moving" out of the system, 2 nasal sprays, and hydroxy B12 with FA. Following breakfast we each take glutathoine with a nebulizer. This takes 20 minutes for each person. It takes 2 hours to get through everyone. I have purchased a new nebulizer but thus far have not been able to get it to work. (this would speed things along for us).
Two to three hours after breakfast we take 3 sequestering agents designed to pull the mycotoxins from our systems. These cannot be taken with the supplements as the nutrition would be pulled from the system as well. This part fascinates me because one of the agents is the drug cholestyramine which my pediatrician agreed to prescribe for me last summer. I was uncomfortable taking anything without the knowledgeable supervision of a specialist and I'm glad I waited. The other 2 agents are bentonite clay and charcoal and are key components as all 3 work together.
In mid-afternoon we take the NSPs again. Dinner we take them a third time along with some of the earlier supplements. Nasal Sprays are repeated and following dinner we do the whole nebulizing routine again. Before bed we do the sequestering agents 1 last time.
We also use ketoconazole shampoo and charcoal soap. We take clay baths as well. 
This protocol largely comes from Dr. Grace Ziem and was developed only in the last few years. 
The kids have been swimming every day in between treatments. It is a consuming routine to say the least and requires every bit of energy I have. But I think back to the first of December when I had nothing to offer them(and myself) and I am grateful.

Two notes of interest. Glutathione is used to treat autistic children and worth the research time for parents interested in pursuing further options.
Our favorite products include charcoal pore cleanse from Collective Well Being. (CollectiveWellbeing.com), All natural calcium bentonite clay from www. livingclay.com. You don't have to be sick to benefit from these products.We're all exposed to various toxins on a daily basis and the clay pulls the toxins right out of the skin. We have noticed tremendous improvement in our skin from both of these!!  The kids ask daily to take a clay bath because their skin feels so soft.



Mycotoxins

I plan to devote an entire post to the explanation of mycotoxins and their effect on the human body. But for today I thought I would share with you some new results.  A few days after we left our home we sent urine samples to RealTimeLabs in Texas for mycotoxin testing. Because of the expense we decided to only test for one of the toxins that come from mold exposure: tricothecenes. These came back negative a week later with only a trace for Reagan and Colin. I was elated.( These mycotoxins are the ones that come from stachybotrys). We were going to get off "easy" and all would be well.  Our samples were archived in the event we would ever want to test for the other 2 mycotoxins.  As the months wore on I could see all was not well. The kids were still sick. Upon the recommendation of Dr. Gray we had Colin and Reagan and one of our older daughters tested for aflatoxins and ochratoxins. This week I learned that all 3 children are positive for aflatoxins and 2 of them positive for ochratoxins. Their levels are high and alarming. Aflatoxins are known to be carcinogenic.
Colin's level of ochratoxin presence is 9 which is very very high. In talking with the doctor at the lab this morning, I learned that the tricothecenes may have not showed up in the urine because we were not being treated and they were "stuck" in their systems and not mobilized into the urine.  As I said, I will explain some of the specific damage these mycotoxins do but wanted to share this with you.

Leptin, Myelin, and an RV

We've had a few of our blood tests come back. These were done back in Colorado under the auspice of our family practice doctor. He talked with Dr. Gray and agreed to authorize them. So far most have come back abnormal. These include our leptin, c4a, and myelin antibodies. The myelin antibodies are of particular concern as some came out positive for myself, Kaitlyn, and Colin (that I know of so far).  The good news about this is that our family doctor in Monument called me specifically to express his concern and support for pursuing medical help in Arizona. He has drafted a letter which I will be able to use to hopefully get our insurance carrier to cover some of these medical expenses. Dr. Gray mentioned to me by phone the other day that one of my children showed a 4353 genetic pattern. He talked at length about receptor cells and susceptible patterns but the bottom line is that this particular child  ( he was driving and couldn't recall which child) would never get better without intervention. We have such a long road ahead but I'm grateful we're on it.
One other test result of interest. Chris' office in the garage of our home was found to be contaminated with aspergillus.  Like stachybotrys this is a toxic mold. Unlike stachybotrys it can be cleaned. So Chris is having his equipment cleaned and is planning on broadcasting his daily radio show from an RV in our driveway. He needs the special phone line that's in his office in order to broadcast so if you're in Monument and drive by our old home be sure to honk at the RV.